Birthday Eve

I thought that Benjamin's birthday wouldn't be emotionally difficult for me this year because I hadn't begun to feel anxious about it until quite recently (last year the beginning of May set me off), which actually gives me hope that eventually I'll be able to face Benjamin's birthday without any feeling of dread at all.

It's not so much that I'm worried about his health anymore. He's a pretty healthy kid. A little on the small side, perhaps, but overall quite healthy.

It's not so much that I'm sad he's giving up his babyhood, though I'm always a little sad about that (I think he's officially weaned (finally) and I'm a little sad about that). He's hilarious as a toddler. So cute. So cheerful. And he's just about sleeping through the night again (and that always helps children seem cuter).

It's a little more selfish than that.

Unfortunate Anniversary

Suddenly it's May. Did you notice? That sure crept up on us! And May is such a scary month, too, because after May comes June and that thought alone is bringing a lot of painful memories to the surface.

I didn't think it would be like this. I really didn't. I've always been one for moving forward, but this year has been hard. In just two days, Benjamin will be eleven months old. We're coming up on his first birthday and have already started our anniversary memories.

"This time last year, I was in Ghana," Andrew reminded me yesterday.

I'm glad that he went to Ghana and I was happy for him last year, too—or at least as happy as an expectant mother can be when she's told it will be up to her to do dinnertime and bedtime by herself every day for three weeks while her husband is on the other side of the globe. I wasn't entirely alone, I realize, since we were living with Andrew's parents and mine were just down the street—but still, it was a burden.

When Andrew came home from Ghana I was thirty weeks pregnant and was due to have my glucose screening the following week. I'd fail that, have the more complicated test the next day and be diagnosed with gestational diabetes. Then we'd go camping.

I'm glad that we went camping and I was glad last year as well—or at least as glad as an expectant mother can be when she has to climb up and down a ladder to the sleeping quarters and tiptoe through a mouse-infested cabin to go to the bathroom twenty thousand times a night. It was a wonderful trip and I'm truly glad we went, even if I ended up catching Rachel's horrible cold.

We'd get back from camping, I'd go to the doctor and we'd look over my glucose numbers to see if I am able to control my diabetes through diet and exercise. I will. But I'll complain about being sick and my doctor will tell me that it's just a cold and I'll be fine.

By now we're already at the end of May. It's Memorial Day and my parents invite us to go to the copper mine, a trip which doesn't work out at all, so instead we'll go to the park to play with them (and with Auntie Emily who'd come down to visit from Idaho). On Tuesday, I'd take Rachel for her kindergarten check up. She'd have to get shots. I'd have to wrestle her to the table in order for that to happen. On Wednesday, I'd take the girls to their dentist appointments but will talk Andrew into coming with us so that he can wrestle Rachel to the chair instead of me. She'll throw a fit, though, so I'll go with her and Andrew will go with Miriam.

I'm now 33 weeks pregnant.

March For Babies

Today was the Durham/Raleigh March For Babies. Benjamin and I participated in it along with my friends Nicole (who was a preemie) and Heidi (whose preemie Andrea recently turned two). We raised a fair bit of money together—far more than we would have been able to donate ourselves—though I will admit that I could have tried a bit harder.

With everything I had going on this month I kind of put fundraising on the back burner. So last night is when I started asking for donations...and I raised $64 (with special thanks to Nicole, my mom, Auntie Emily, my cousin Tara, and Andrew).

Nicole was kind enough to drive our little team to the event, which was way over by the airport. I'm so glad she did because I was absolutely exhausted this morning—Benjamin stayed up partying until nearly 2 AM last night and then I had to wake him up at 7 AM so we could get ready to go. He was not a happy camper (and neither was I). He cheered up though once we were registered and began to explore all the booths they had set up.

We hit up the stroller decorating station before visiting the emergency response vehicles. Benjamin wore his Life Flight t-shirt his crew gave to him when he was transfered from American Fork Hospital to Utah Valley Regional Medical Center.

Peak-End Rule

Just over eight months ago Benjamin was given a t-shirt by his Life Flight crew when they packed him up and carted him away—to another hospital in another city, leaving me all alone in my small, depressing recovery room. I remember looking at that t-shirt and wondering how he'd ever fit in it. He was so scrawny!

He's now three times the size he was then so I pulled out the shirt. It fits him quite nicely.

And we're back!

Adjusting to life with three children has been more complicated than I'd imagined. Do you want to know what I imagined? Don't laugh.

What I had imagined was that we'd bring our bundle of joy home, walk through the door and be greeted by squealing, excited sisters. And there would be unicorns and rainbows, sunshine and daisies. And life would be eternally blissful. The end.

Benjamin's Life: 24-hour request

Our first twelve-hour request was rather depressing. We arrived at the hospital fro the 10 AM feeding and the nurse told us she gave Benjamin a bottle at 7:00 and that we could start our 12-hour request and be out of the hospital by 5:00 that afternoon. It didn't go so well. He got tired and had brady after brady after brady. Later our neonatal specialist pulled out his chart where bradys are recorded and showed us entry after entry of bradys and explained that we wouldn't be able to go home until the problem stopped. Our occupational therapist later told us that 12-hour requests shouldn't start with a bottle feeding--they should always start with nursing because taking a bottle is typically easier for babies than nursing is and so should be reserved for the end of the request, just in case the baby is too tired to nurse.

Needless to say, we failed. And then Benjamin had his PCG5 which revealed both central apnea and reflux. We were told we'd be going home with Benjamin on oxygen, hooked up to an apnea monitor. And we were happy with this decision because it involved the word "home" and also took some of the scariness of taking a preemie home--because if he does happen to have an apnea episode at home the monitor will pick up on it and an alarm will sound which means that I won't have to stay awake 24/7making sure that my baby is breathing.

Benjamin's Life: PCG5

The acronym PCG5 seems a bit misleading since the P is technically silent and all three letters come from the same word: pneumocardiogram. I, uh, don't actually know what the 5 is for.


Anyway, it's a twelve hour test that measures all the vitals they normall measure (respiratory rate, heart rate, oxygen saturation levels) in addition to a couple of others (effort, air flow, things like that). It also involves a pH recording to see how acidic his spit up is (in order to determine whether or not he has reflux). He got all hooked up after we did our back-to-back feeding yesterday (so around 2:30 PM). 


We didn't see him until 10:00 last night and boy was his little room crowded!


This is the normal set-up:

Benjamin's Life: Four Weeks

I keep thinking that my tears have all dried up, that I'm finally getting used to things, that I'm handling things well. And then the weekend hits and I turn into Old Faithful. The reason the weekend is so awful, I think, is because it's when Benjamin gets older.

Sure, he gets older everyday. But by the time Sunday rolls around he's a whole week older. It happens every Sunday without fail. Andrew and I will look at each other and one of us will say, "X weeks ago you went into labour," or "X weeks ago Benjamin was born," and it opens a flood of memories—horrible memories—of Benjamin's birth. The terror of realizing that our half-baked baby was coming too soon. The panic of realizing our baby really could not breathe on his own. The grief of saying goodbye before he was loaded into the ambulance. The loneliness of sitting in the hospital with no little baby to take care of. The thrill of finally being discharged and walking out of the hospital...to drive to another hospital...to finally hold my baby. The nervousness of feeling his tiny, fragile body next to mine. The fear that I would never be able to take care of him. The desire to have him home and healthy...or, better yet, to not have him here—to still be pregnant.

I've said it before and I'll say it again. It's strange to not be pregnant when you should technically still be pregnant. And it's strange to have a baby but not have that baby with you.

But Benjamin is getting closer to being home with us everyday. I said the weekends are difficult and this one was no different. I cried a lot on Friday. And Saturday. And Sunday.

Benjamin's Life: Back to Back

This morning Benjamin nursed and when he finished he had a test weight of +72 grams! When we went in to feed him this afternoon the nurse practitioner was there and she poked her head into our "room" and said, "Have we talked about doing a back-to-back feeding? Because if we haven't, we should. How about...if Benjamin eats really well right now you just come in for the next feeding and we'll try him on a back-to-back. Does that work for you?" We said we could make it work and then talked about how to arrange babysitters and things while I fed Benjamin. Then we did his test weight and it was +66 grams!

We made a few calls, sent a few texts, and made it so we could just stick around the hospital until his next feeding. He usually rests for six hours between feedings. I feed him at 10 AM and 4 PM and 10 AM and he gets a bottle at 4 AM. At 1 PM 7 PM 1 AM and 7 AM he gets fed via NG tube/gavage.

Today, however, I fed him at 10 AM, 4 PM and 7 PM. It's a "back-to-back" feeding because he had to nurse two feedings in a row. And he rocked it! His test weight was +53 grams.

We don't know what the plan is for the next few days but we do know that our days will be full of getting Benjamin ready to come home! I could cry tears of joy (but I've spent so many days this month crying that I think I'll pass).

Benjamin's NG tube—they only put 16 cm down his throat to his stomach

Benjamin's Life: Bath Time

On Monday night we stayed late at the hospital in order to give Benjamin a bath. It wasn't his first bath but it was our first time bathing him. Really it was Andrew's first time bathing him since I just stood around taking pictures. Truthfully, though, Andrew is usually the one who bathes the girls because whenever I bathe them they fight and scream and we all end up angry at each other. But when Andrew bathes them they end up clean and happy. I don't know why. So, likely, Andrew will be the one giving Benjamin baths, too.

We don't bathe our children all that often so it's not like it's a huge burden.

I don't even feel bad about not bathing our children very often because Benjamin only gets a bath every other (to every third) day in the NICU and unless he covers his outfits with spit up or leaks through his diaper his clothes only get changed every other (to every third) day. If the hospital can do it I can, too!

To bathe a NICU baby you fill a little tub with warm water and use rolled receiving blankets for supports. Benjamin got wrapped in a lovely firetruck-red fleece blanket to help keep him warm during his bath. Andrew lowered him slowly into the tub and you could see Benjamin relax completely. If he could talk he probably would have said, "There's no place like home! It's warm, it's wet—it's lovely."

Benjamin's Life: Oinker!

Whatever it was that was supposed to click has apparently clicked. It helps, I think that they started him on Prevacid (I always want to say percocet...but it's definitely not) to treat him for reflux. Apparently reflux makes babies absolutely miserable. When the partially digested milk starts going back up the esophagus and into the throat it annoys a nerve that affects the heart. In preemies, the heart burn that reflux cause can make the infant go into bradycardia. Since Benjamin was having so many bradys the doctors decided to do a trial of Prevacid, which doesn't cure reflux but treats the heart burn, to see if that would help stop the bradys and help him want to nurse a little bit more. They started the Prevacid on Friday, June 22nd.

On Saturday, June 23rd, Benjamin ate 51 mL in one feeding! It was his first time ever nursing enough to get 100% of his feeding without supplementing with the NG tube. In fact, he over-nursed since a full feeding for him was only 48 mL. Everyone was very proud of him and he did such a good job that the following day we were asked to try for three feedings.

June 24

Benjamin's Life: A Roller Coaster

Benjamin's gone from zero to hero in just a couple of days! To think I spent my birthday eve bawling because he wouldn't eat a gosh darn thing and this morning he ate and ate and ate (and then he ate some more) and when we put him on the scale we found that he had eaten 51 grams worth of milk! A full feeding for him is only 48 ml, so he ate 3 ml more than he needed to and he did it all on his own!

The best part is that he kept all his stats up so we didn't hear the alarms go off once the entire feeding (or after)! It was a great visit.

The girls came to see him this morning, too. Rachel suggested that Miriam go in first since last time Rachel went in first. What a sweet, considerate girl she is! Rachel watched through the window while we took Miriam inside.

At first she was very excited to see her brother:

It's my party and I'll cry if I want to

From my short experience being 27 I have found that 27-year-olds cry a lot.

As Krystal so wisely divined, we've taken a step backwards with breastfeeding and now it's like we don't do it at all. Last night I couldn't get Benjamin to wake up at all. We didn't even bother doing a test weight for him because I knew he couldn't have eaten anything, since he didn't bother to open either his eyes or his mouth the entire time I was there. It was so frustrating!

I asked Andrew to take the baby and then ran from his bedside, telling our nurse on my way out of the NICU that Benjamin was ready for his feeding. Then I sat in the pump room and cried and then pumped—more than 8 ounces in 7 minutes (eek)—and then cried and then washed the pump stuff while I cried and finally went out to meet Andrew in the lobby. His dad was on his way over from BYU campus, which is right next to the hospital, to help give Benjamin a blessing.

We hadn't asked him to come but for some reason he texted Andrew to ask if we were at the hospital and if there was anything we needed. Funny that he should think to do that the one night that I had I complete breakdown; he's never stopped by to see the baby before and he goes to BYU four nights a week.

I was happy to have a few minutes to collect myself before going back into the NICU. I was also happy that our nurse was a man. His name is Kevin and we've had him three nights this week and he's great. It's also a slightly awkward because NICUs involve a lot of...cleavage. Kevin won't come into our cubicle while I'm nursing or pumping and always announces himself if he's planning on coming in so that I can make sure I'm decent, which is nice. But he also has no advice and offers no assistance in the breastfeeding arena.

But, he also doesn't hover over me when I have a meltdown.

Instead he went in to start the feeding and said to Andrew, "Wouldn't latch on? Figured. He's been pretty sleepy lately." And then he made an appointment for the occupational therapist to visit with us the following morning without saying anything like, "Are you alright, sweetie?" or "Go home and get some rest," or "There, there," which I appreciated because sometimes when I cry I prefer people to pretend that I didn't instead of trying to be sympathetic (because sometimes sympathy just makes me feel worse instead of better). 


Right now I don't cry because of a specific incident—like, it's fine that Benjamin was too tired to nurse; I get that—but because I'm so stressed out about the whole situation in general that it seems there's a daily straw that breaks the camel's back, so to speak. 


Sometimes there are multiple straws that break my back everyday. 


I can't help it. I'm one big mess of emotion. And I'm so stressed out. 

Benjamin's Life: Nursing School

Benjamin has been rocking the nursing scene lately. We've been doing test weights for three days now (four including today) and so far his test weights have been up by 9 and 10 ml (on Sunday), 10 and 13 m (on Monday), and 25 and 10 ml (on Tuesday). He was rather exhausted for his evening feeding yesterday but that's probably because he only had one tube-feeding in between to recover from his huge 25 ml feeding. It was the only way we could see how to work his schedule yesterday, though, since we wanted to go to the parent support group/pizza party/car seat class. We brought the girls with us to do the 4:00 feeding—they hung out in the parent room and watched a movie while Andrew worked and I did Benjamin's cares, and then we all went outside to play by the fountain (which had been turned off by the time we got outside; the girls had fun anyway) until it was time for the support group.

Who are the people in your neighbourhood?

It was a happy day when Benjamin moved into the Level II NICU (June 6). That nursery is full of relatively stable babies, just doing their best to grow and learn enough to go home. The babies are much less prone to tripping their alarms and their cries are usually cries of hunger rather than cries of distress. It's much quieter than the Level I NICU, where alarms are constantly blaring, where new babies are admitted and intubated and where they sometimes have surgery, where the cries are cries of panic and discomfort because who cares about eating when you've been snatched away from your mother and don't even know how to breathe yet.

We loved the calm feeling of Level II the minute we walked through the doors. We were even more happy to see that our neighbouring baby was Jack. We met Jack's parents at our first Tuesday Pizza Support Group. They'd already been in the NICU for six weeks and were sitting, completely relaxed, chatting to everyone like it was totally no big deal.

We'd just been admitted and I had just gotten through holding my baby the second time since being discharged from American Fork Hospital. We were sitting rigidly in our chairs and I'm sure we still had shocked expressions glued to our faces. But Jack's parents shared their story and listened to ours and assured us that the doctors and nurses do a fabulous job and that it doesn't last forever—they were getting ready to go home soon (at long last).

When I saw Jack beside us, I was glad that I'd get to know his mother a little better because she seemed so nice. But then, that very day, our first day in Level II, Jack went home. I was happy for his family but kind of sad for us.

Benjamin's Life: Two Weeks

Having a premature baby is quite a bit different from having a full-term baby.

That's probably the understatement of the year.

Anyway, Benjamin is now two weeks old (as of yesterday) but we don't really think of him as being two weeks old because we're still counting his gestation age. Benjamin is 35 weeks and 5 days old...so just about -1 month old. It's funny that I lose track of how many days old he is because I'm always counting how long I should have been pregnant (and boy do I wish I was still pregnant).

He's still doing just great!

Benjamin's Life: Meet the Sisters

Benjamin finally got to meet his sisters! Due to illness last weekend the girls only got to look at him through the window.



Today, though, they looked at him through the window and got to come inside to hold him. They were thrilled!

Rachel came in first and chatted up the nurse, who brought in a tiny diaper for Rachel to take home to use with her dolls. Rachel politely asked if she could have a second diaper to give to Miriam so the nurse went and got another one. You can see it in the picture of the girls in the window—it's a little bigger than a credit card. Benjamin didn't ever have to wear that size (thank goodness).

Benjamin's Life: Mumurings

Today I got to put Benjamin's outfit on. It's one that I picked up at a clothing swap and thought about giving to DI but ended up keeping...just in case.

It's so tiny! It's smaller than the other premie clothes that we've been given (which I haven't washed yet) and when I held it up to him today I didn't think there was any way that itty-bitty onesie would fit on that great big boy! With much difficulty (it's been a while since I've tried to dress a newborn) I got him into it...and it practically drowned him!

Benjamin's Life: A boy and his IVs

By Friday (June 8) Benjamin had been weaned off fluids and lipids. It was kind of a big deal for him—it meant he was getting all of his calories from milk so he no longer needed an IV line for that. It also meant that he could start wearing big boy clothes! Unfortunately, he had to keep an IV line in to receive his antibiotics. Today he gets his very last dose of antibiotics and then he'll be completely IV free. I am so excited for this because his IVs keep going bad and then they have to put one in at a new site. It makes him miserable. (Video from June 7...and this is just taking out the bad IV...you should have heard him when they put in the new one).

Benjamin's Life: Day 1 and 2

I can't believe it's been a week already. We're exhausted and stressed and emotional but it's all beginning to feel normal. The other night I pondered about who else takes naps at seven o'clock at night so that they can perform a bedside vigil of sorts from ten o'clock until midnight. Andrew answered, "NICU people do. We're part of the NICU culture now. It's a strange culture."

We've read a lot about the NICU culture. It seems like in recent history many of my friends have gone through (and written about) a NICU experience. I suppose it was preparing me to become, as my friend Krystal said, a member of the "premie mom club—the one club no one asks to join, but everyone here rocks!"

Everyday we get a new brightly coloured wrist band—the badge of our membership. It feels like it should be exciting, getting that wristband, like we're being admitted to a fair or something. But of course it's nothing like that. Or if it is, it's the saddest fair I've ever been to.

Being at the hospital all the time is starting to feel normal, though I still feel completely helpless about the whole situation. I don't feel like there's much I actually do for Benjamin at the hospital and I don't feel like I do very much for the girls at home and I always feel guilty for being in one place and not the other. So I always feel guilty in addition to feeling exhausted, stressed, and highly emotional. My daily regimen basically consists of eating, sleeping, pumping, crying, and traveling to and from the hospital.

Today was the most normal day we had all week. We took the girls to the hospital with us so that they could peek at baby Benjamin through the window. We had been hoping to let them meet him but someone (Miriam) had the brilliant idea to start throwing up yesterday. The kids are only allowed to visit on the weekends. And only for five minutes at a time. We missed last weekend and it looks like we'll be missing this weekend, too. Rachel was a little upset about it but I explained to her how Benjamin is already sick (spoiler alert: Streptococcus mitis) and that we can't risk giving him any other germs.

Before bed tonight—Andrew and I did the whole bedtime routine by ourselves, which helped today feel even more normal—Rachel said, "It's okay if we can't meet Benjamin tomorrow, either. I don't want him to die."

I assured her that no one wanted him to die. And he's actually doing amazingly well...you know, for a premie. It's obvious that the girls are stressed and worried, too. I think this has, hands down, been the craziest week of our lives.

Let's back up and start at the very beginning, though.